Skyler had his wellbaby appointment on Monday, he weighs 10 pounds 10 ounces, which is about normal for his uncorrected age. His head size is normal too, but his growth seems to have slowed, he has only grown half an inch. And he has a heart murmur, and he has nystagmus. So we are being referred to both a cardiologist and a neurologist. He also needs his bloodwork done for endocrinology sometime this week. Too bad I didn't ask if she could refer me to someone who will keep me from ripping out my hair with worry. Argh.
I love that our NP reassured us that it sounds benign and he'll probably grow out of it, but she sent referrals to specialists just to make absolutely sure. I didn't have to pull teeth to get him checked out, she didn't treat me like a stupid/crazy parent. She respects us and our son and I love that about her. I couldn't imagine having anyone else taking care of me or our son.
So I mentioned last time that I'd talk about our decision to homeschool. We've reviewed our options and so far there is no other way to do it. There are just too many variables. He is going to need his teachers to know when to give his meds, how much to give, how to administer them and how to document it so that the other teachers and his parents (us) know exactly what time it was given at and how much he received. And it's not as simple as a certain time of day a certain amount. He will have his scheduled pred every morning, but if he needs a stress dose someone will have to be alerted to that fact, decide if he is stressed out and then give him the appropriate amount of meds and document it because he can't have another dose for 12 hours after the stress dose.
Which means he would have to have someone with him the entire time he is at school, in case he falls at recess or gets hurt in gym class or has a fit in math class, or catches a cold and starts sneezing in english class. Which means he'd likely end up in a special ed class. Assuming he is neurotypical this is not something I want for him. First of all I don't trust anyone else with his meds. Secondly his needs are not as severe as many others and I don't think it's fair to the other kids or him to have to have special ed resources when we could easily manage to teach him at home until he is old enough to manage his own meds.. Especially if he ends up being in lifeskills classes or something and gets left behind. Any thoughts on this? Maybe I'm just crazy
3 comments:
Wow, that's a really tough decision. I think if you do end up deciding to put him in school that you should definitely ask them to give you a plan for how they will manage his care before you enroll him. The meds would definitely worry me too.
I know at our small private school it wouldn't be an issue. We have someone trained to give medicine, and there are a few students in similar circumstances as Skyler and she is in constant contact with their parents. Everything is documented and she has to turn it all in to the state, as well. If you could find a situation you are comfortable with, homeschooling wouldn't be the only option, but it's finding that comfort zone that would obviously be a challenge. We're thinking of homeschooling, too, so don't think I'm opposed to it!
I think it's great that you would have the option to stay at home with Sky to home school him (if that's what you decide to do).
It must be a very tough decision with him having to be on constant medication.
Like Amy mentioned, perhaps the possible school that Sky would enroll in would have a school nurse available to give him his meds should you choose to go that route.
Luckily you have a sufficient amount of time to weigh all of your options and so plenty of research.
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